Tag Archives: Children

I’m riding the “bad parent” wave each time we go out this summer. TinyPants starts high school in September and at age 11 has asked for a number of things that I’ve agreed to despite parental tutting. Here’s why:

She’s always had a strong sense of identity and year 6 has contained some big knocks for her. Instead of the last year of primary school being a fanfare of goodbyes, she counted down the days until she could be rid of bitchy cliques & a head teacher that she openly hated (strong words, but she had big boots to fill & did little to endear herself), and then there were SATS.

Since September, everything was building up to these bloody exams. Art, music, creative writing, science – all the things that made TinyPants love school went by the wayside. Maths drills, spellings, & exam papers were the daily grind – after which there were hours of tearful homework.

“Do your best & we’ll be as proud as always” we kept telling her. In the end, she sat in pain for 4 solid days doing her best (she was allowed to get up frequently, but allowed no extra time. Fearful that she wouldn’t finish, she didn’t take breaks. By day 4, she had a roll of physio tape strapped to her). Previous end of year reports have been a joy to read with comments given across the curriculum; this year one page was given with a table highlighted in red for each of the maths & english exams – “did not achieve”. The pass mark is 100, in most she scored 98 & in one 94. No “how I enjoyed my year” comment, but a “how could I have improved in my exams”. In contrast, her sister has a high school report with gold stars for effort & all subjects treated equally.

I was furious. My baby has fought past being born so tiny that she lived in an incubator; she fought apnea; she worked so hard to read (something that didn’t come naturally); she has emotional intelligence to rival most adults; she is a young carer; she has mentally prepared herself to be in daily physical pain & smiles through it; she worked like stink to pass those exams and yet she was deemed insufficient by a margin of 2 marks. She didn’t see how close she was – she saw “failure”. The piece of my mind that I’d like to give Gove, Morgan, & Greening may leave me without a mind. This narrowing of the curriculum and constant testing is stamping out the creative sparks that we’ll need in years to come.

So she asked to rebel, much like getting a statement haircut after a big break up. Step 1 was pink hair and I agreed to dye it for the final day. Step 2 was leaving primary behind – I genuinely feared her going out in a blaze of verbal glory, but she took the high ground and walked out with her head high (mentally flipping the bird as she left). And that was that.

She’s using the summer to find herself & that includes strange hair colours. We’re watching a pre-highschool reinvention of herself & it’s fascinating. She’s ditched the little kid clothes for older, but sensible shirts & jeans. I’m watching me grow up from a distance, but with a lot more self-esteem! Yes, we’ll have to get busy with the Head & Shoulders to remove the colour before school starts (eye roll), but for these 6 weeks the girls are allowed to be their genuine selves, whoever that may be.

We’ve just got back from a week at Disneyland where she asked to ride ALL of the rollercoasters on hoiday. I feel sick letting her put her body through that kind of strain – she’s already in pain most days & her back is a big culprit. Ibuprofen, TENS, & physio tape already feature quite regularly. Now, I could insist that she protect her joints at all costs, but shit, what right do I have to sap the joy from her life? She knows that adult life is going to hurt, but the pair of us are adrenalin junkies. At her age & into my teens I rode the coasters, I rode horses, I cornered so hard on my motorbike I could pick daisies with my teeth. So each time she wanted to go on a gut wrenching ride off Mr Geek went & rode with her.

Did it kill her? No. Ok, near the end of the holiday Mr Geek had to carry her out of bed & she gained wheels just like mum for part of the day as she couldn’t stand. Most days we paced quite well, the day before we’d thrown caution to the wind, but had the “best day evaar”.

Hell, even I rode a coaster – Mr Geek scoped it out and made sure it had head & back supports, I spent the previous day resting, he lifted me in – I screamed for the entire ride (on which my kneecap moved completely out & I pulled out both shoulders) – he lifted me back out & helped me pop things back, soothed the muscle spasms, then I rested for two days. All that pain for just 5 minutes? Yes. Totally worth it for feeling alivefor just a while.

TinyPants looks at me and knows what’s coming – right now she wants to live as much life as possible instead of snatching 5 minutes of flying.

So, yes I’m letting her dye her hair far earlier than I ever thought I would, but it’s a small price to pay for the catharsis that its brought her. And as for Beanpole, well there’s no hair dye there – her genuie self blossomed at high school and my meganerd is blossoming into the intellectual fangirl that I expected, but she deserves a post all of her own.

Note: I’ve spoken a lot about pain here – for more info on Ehlers Danlos Syndrome, please read this post.

Every generation has defining moments when everything is brought into sharp focus and speaking your mind comes bundled with the threat of a backlash from those seeking to silence your freedom of thought.

For my parents it was the wars fought in Vietnam & Korea. My Dad missed conscription by a year. Both he & my mum were hippies & pacifists. They personified the 60s and I love trawling through the photos they kept seeing these people that existed before I remember them as adults.

My grandparents, it was WWII – my paternal Grandfather was in the Canadian Army deployed in Italy (then France), shot three times and like the black knight still suggested he was up for more. Tough as old boots, he lived into his mid-90s out in Canada. My maternal Grandfather was in the British Navy in the South Pacific. They both fought against fascism and returned with physical & mental scars. My maternal grandfather died shortly after due to cancer caused by radiation from Naval experiments. I have a personal beef with Von Neumann.

My great grandparents differed. My maternal Nanny spent so many hours telling me about living through the WWII Blitz in London, and before that working during WWI when my great-grandfather was in the British Navy. She saw women given the vote when she was 26 (1928). in contrast, my paternal Great-Grandparents were farmers in Alberta, Canada having arrived there a generation earlier after fleeing Germany and walking (yes, walking ) across Siberia. I never met them, but seeing photos as an adult, my Great-grandmother looked just how I imagined her as a child outside her hand built log cabin.

As for us, Mr Geek & I were born in & remained in the UK to reasonably affluent parents who had long since hung up their flares & gogo boots. We were born as Citizens of Europe and comfortably grew up embracing other cultures whilst feeling a bit sheepish about the behaviour of some of our more stereotypical ‘Brits Abroad’. We embraced ‘alternative’ as a longer than technically necessary rebellion with our massive baggy jeans with chains, coloured mohawks, nylon dreadlocks, and more eyeliner than an Ancient Egyptian. We were comfortable just being ourselves. Then a chain of events led up to the worst family conversation of my lifetime:

“I think I’d prefer not to know and if the bomb drops to think, oh light. Then gone.”

“Agreed. I wouldn’t want to live through that. Or worse, live through it and be ruled by Trump.”

… and I just sat listening with that rising feeling of panic you get when you think your children are in danger…

So what pivotal moments turned that purple haired rocker into a muted mother terrified of the actions of a man the other side of the world?

As kids the word terrorist was familiar – the IRA were regularly planting bombs (one of which blew up 15 miles up the road). In 1998 a peace agreement was signed and people carried on. Incidents like the nail bombs that went off in brick lane, London in 1999 hinted at a Far Right terrorist movement rebelling against the authorities tackling internal racism and were treated with disdain. Concurrent life sentences were handed out and life settled as politics became more centred on society. Organisations like Sure Start were created to help struggling parents fulfil their desire to be productive parents, a minimum wage was enforced, government assistance started to help those in work to combat poverty…

2001 – 9/11 happened (or 11/9 over here). Suddenly the US were involved and after gathering ourselves from seeing horrific sights just unfolding on what felt like every screen in the world, everyone held their breath waiting for retaliation. We didn’t have to wait long.

2004 – Beanpole arrived. At 24 I’m regularly using crutches for “SPD that never went away after pregnancy” (yep, that happens *insert sarcasm*). I literally didn’t know which end was which, but this tiny 5lb little thing was now the centre of my universe.

2005 – A most excellent wedding (can you tell I’m 4 months pregnant ?). Mr Geek looks so young! TBF we were – he was 23 here & a lady never reveals her age.

2006 – TinyPants arrives in spectacular style waaaay too early & refuses to acknowledge that she has to breathe for herself. It’s just too much effort, so spends the next 6 months traumatising us. We continue to just be us, but with tiny rockers with us.

2007 – Sophie Lancaster was murdered by teenagers in a park she was walking through with her boyfriend. Even now, I can’t go back over what they did, but they were attacked for looking different. For looking like we did. She was 6 years younger than me.

We were settled into our own house by now with an ever expanding broods between us & the GypsyTrees. This was my favourite time of all.

2008 – The Credit Crunch TM. Somehow the banks lost most of their money & everyone looked a bit shocked when it wasn’t down the back of the sofa. The banks weren’t keen on paying for it, so convinced the government that they’d have to pick up the tab… meanwhile, Iceland who maybe possibly lost all the country’s money wiped the date clean by firing it’s government, cancelling all debts of everyone in the whole country and starting again. (Fast forward & who’s still in austerity? It’s not the people with fish money)

My first outing in a wheelchair. More often using my funky stick when things get too much. (I’d not realised until I looked back at photos that the stick appeared so early.)

2014 – Gamergate started. (Why? Because an ex boyfriend wanted revenge on the woman who’d moved on). It wasn’t exactly new, but the ferocity of people online suddenly increased. By this point, I’d been playing regularly online for over a decade. Men posting their genitals online was nothing new – if anything, it was boring. But there was a shift in the tone. I started playing male characters outside of my known & safe guild.

2016 – There ought to be a room 101 for this year, but here goes. Leaving all the celebrity deaths aside just for now: The UK voted to leave the EU against the advice of all financial & political experts because the then Prime Minister used it as a vote winner to get elected. Once the vote went horribly wrong for him, he promptly resigned and scuttled off vacs to his wealthy family leaving a leadership contest between a woman who complained people were being mean to her, a man claiming that prayer cures gayness, an ex education minister who most teachers would eagerly be left alone with a hot poker for 10 minutes with, a floppy haired buffoon who’s lifetime achievement was getting stuck on a zip wire, and Little Red Riding Hood’s Granny post Wolf transformation. One by one they stood down after realising that they weren’t actually fit to run to the shops let alone run a country, until just Wolf Granny was left; our currency crashed (further); The political opposition ate itself and became defunct; Then the US voted in Trump.

At which point the whole of the world turned around at America and made this face:

So here we are. It could so easily be a message of doom & gloom, but as one year closes another opens and I remain infinitely hopeful that Trump will be nullified either by being such a tremendous twat that he impeaches himself or that the actual politicians will keep patting him on the head & remove his Twitter account. I’m hopeful that an effective treatment for EDS will be discovered and we can stop me (and so many others) falling apart. I’m hopeful that Brexit negotiating will take so long that it won’t be seen in my or my children’s lifetime (or, that EU opt in becomes a thing). I’m hopeful that I’ll still be working this time next year. I’m hopeful that Beanpole continues loving every second of school & TinyPants survives the SATS relatively unscathed (seriously year 6 teacher, keep telling her that her best isn’t good enough, see what happens…). I know we’ve lost so many special people this year, but in the words of one of them:

And with that, my survival rate for shitty times is 100% so far. Despite appearances , I seem to have a track record for surviving and if you’re reading this you have too. Let’s keep this up for 2017.

Last year I wrote about how I explained to my classes why their teacher who was previously using a stick, then crutches, was now using a wheelchair. Or for those new students, why the person in the wheelchair was in fact actually their teacher.

I’m starting to look at how I should update that message to reflect where I am now & what I learnt from last year (yes I know it’s the start of August, but yes I’m also already planning for September).

The past year has taught me a few important things.

Discipline is harder from this vantage point – set boundaries and [insert deity here] help them if they cross it.

Kids are often curious. Often a question about me is really about a family (or even them) that they’re worried about.

Kids adapt – after a few weeks, you’re just “Miss”

We use Google Classroom & as such I will post this to each class which allows them to read it in their own time & stops it eating into lesson time.

Dear students,

You’ve probably noticed that Mrs Geek has evolved wheels & you might have a few questions. Our lesson isn’t the time for this, but you can always ask me questions during break / lunch! Until then, here’s the biggies:

Why are you in a wheelchair?
I have a genetic condition called Ehlers Danlos Syndrome & POTS. EDS makes my joints & organs more stretchy than they should be, so I get hurt quite a lot and those injuries don’t heal very well. POTS means that when I stand up, or get too hot, my heart beats too fast & makes me dizzy. I’m using the wheelchair to stop me from hurting my joints, or dizzy, & getting too tired to mark your homework! People use wheelchairs for lots of different reasons. I love teaching you & this will help me to stay teaching you for longer

Can you walk?
Yes, a little bit. Don’t be surprised if you still see me stretching out my legs in the chair, or stand up. You’d be achey too if you sat down all day! Lots of people who use wheelchairs can still stand, but it’s safer for them to use the chair.

Why do you sometimes have other bandages?
You might see me wearing various different neoprean supports. I can damage my joints very easily & these help. Lots of you have noticed my knee brace (yes, you may call them Robolegs. I do!). Sometimes you might hear my joints cracking or pop – don’t worry!

What do I do if I need your help?
In some rooms it’s hard for me to get to you, but you can come to me & I’ll take control of your screen. We’ll keep using Google Classroom & that should help us lots! If you are at all worried that you’re not getting enough of my attention, please come and talk to me.

Is it OK to ask you questions about your disability?
I don’t mind you asking outside of lessons. I can’t promise I can answer them all, but being with someone disabled isn’t something to be scared of. Even adults aren’t always sure what is ok to ask. I promise not to be offended as long as you are polite.

How fast does your chair go?The powerchair you see at school goes 4mph which is a quick walking speed. I’m much faster in my racing wheelchair. Keep an eye out for me at sports day!

Can I have a go in your chair?
No. I rather need it

Can I help in the classroom?Sometimes I may ask you to carry books / chrome books for me & holding the door open is always appreciated. Please keep your bag & coat under the desk & your chair tucked in to allow me to get around the room. Other than that, our classroom is business as usual.

Bluebells were on my mind. A week or so ago I started a gofundme campaign to help me raise enough for a wheelchair cycle to help get me out of the house & back doing the things that we love as a family. I never expected it to take off like it did, and thanks to some enormous generosity and a chance ebay encounter, this weekend I found myself cycling through our local woods and enjoying a surprise bit of sunshine & the bluebells!

More than anything, this blog post is a thank you to everyone who helped to make this pipe dream a reality.

Bluebells! Thousands of 'em (photocredit: TinyPants with my phone)

Every year we’ve taken photos of the girls enjoying this sign of spring & this year we finally managed a few, although Beanpole wasn’t keen (hence her absence as we didn’t want to push it). A much required rest in the middle of our ride along the firetracks gave ample opportunity for posing.

TinyPants had control of the camera for most of the afternoon, so many of the photos are rather interesting. I love how happy Mr Geek looks here with his whole family back in the fresh air. And so much green!

Having managed a decent distance with my knobbly tyres & trike working beautifully, we stopped for a break and a chance to admire the view. We certainly got some funny looks as I trundled past kids on bikes & people with dogs. The kids were having a great time and thanks to the softly inflated knobbly tyres I barely felt anything going across gravel. Plus, I was outside!

So here we are in action. Me and my bikers 😙

Did you see that smile? That’s the smile of a person who hadn’t breathed proper country air for months… and has no clue that her battery is about to die a horrible death 1/2 a mile away from the car! To give it it’s due, we managed 5 1/2 miles and some serious hills before it died. So on tarmac, it’s got a fair chance of lasting a fair bit longer. Even so, that was our cue to make sure we pick up a spare battery before we head off over the summer.

Despite that minor blip, it was the best afternoon in months. My family, our woods, the smell of spring, sunshine. And clearly, from the state of my mood, some serious vitamin D. 😆

Even better is the fact that trip 1 caused little more than some shoulder, hand, & leg pain & core muscles that feel like I’ve done 100 situps! No joints came out. No trips to A&E. Just a few hours of fresh air & freedom.

What a strange concept. In a family who lives geographically close (in the same house!), we share very little emotionally. As a rule, we’re very British with our stoic attitudes, stiff upper lip, and if need be outright denial. But for a brief moment this evening, my dad and I had a real conversation.

He’s been very practical about me losing my mobility, but I confessed to him how hard its been to accept using the wheelchair so much despite the clear benefits its had to my pain levels. And he told me not to be so hard on myself and how hard it was seeing me in increasing levels of pain.

This might be a standard conversation between most parents and their offspring. Certainly, we talk to our albeit much younger kids and never end a day without “I love you” even if its met with door slamming teen style. But that’s not a mirror to my parents. Whilst I take many cues from my parents (hey, they didn’t do a bad job!), the softer side of my parenting comes from Mr Geek’s family. I heed their advice on how to roll with the punches of two preteen daughters.

There’s nothing more insane than a family, and even more so mine. My mum has softened over the years, and although she remains the queen of denial, is more open than ever. Much like her grandmother, she’s at liberty to be softer now there are small(ish) people who look to her for cakes and hair brushing. My dad on the other hand has become harder. We used to sing together when I was a kid, either by playing his vast collection of vinyl or with guitars. When we go away, I still end a phone call home with “love you”… But he doesn’t respond. Weirdly, whilst that smarts, I know that’s just him – he shows it in other ways like building Mr Geek an office from scratch, getting my stairlift installed, making doorways accessible for me… But rarely talking. So when we do, it’s great. My Dad is still there.

One thing that’s come out of me getting ill (is it ill when it’s a syndrome? I don’t know.), is that the house is more harmonious. When I was hiding how bad things were there were arguments over being untidy and unsociable (going to bed at 8 because, well pain = knackered), but the pieces of the puzzle appear to have fallen in and whilst I still put on a brave face along with my big girl knickers and get out there to keep working, I can be much more honest about how affected I am by being in chronic pain. Case in point, writing a blog at 3am because my legs have some kind of lightening storm going on and getting up to pee set off other bits (I really wish oramorph was a bit more effective). Tomorrow will be another 13 hour day at work, but I’ll suck it up knowing people will make allowances as I recover on the following days.

It doesn’t matter if I can’t dance, by breaking the pain cycle of hiding how bad it actually is, I’m coping better. I state my pain levels as a fact, don’t dwell on it, then laugh at how it takes two of us to make a smoothie! Who knew that I’d be up at now nearly 4am and actually be OK with that. Take this as a metaphorical ‘hold my beer’,I’m going to try throwing all my spoons in the air 😉

Like this:

Today was the kids’ Christmas fair at school and I’d agreed to help out (you know, because I have tonnes of spare spoons). In return the parents association agreed to give all of the donations given at the door to the Ehlers-Danlos UK charity.

As usual, facepainting was really popular, but not so busy that I didn’t have time to paint a special candy skull for my friend Kate.

I’ve not picked up a paintbrush since August, so I was so relieved that my hands held up. I’ve not been able to hold a pen for more than ten minutes, but using sponges & paintbrushes seemed to be OK. Perhaps because the action of painting is light compared to writing. Whatever it was, although my designs were pretty basic, I lasted the couple of hours I needed to and created lots of reindeer, Elsas and Anas.

A friend asked me what I was doing there in that “but you’re ill” way, and then we fell about laughing. She’s been at the front line of all of these events for the past 5 years despite battling breast cancer in a way that made Boudicca look like a wallflower. We had a great chat about sucking it up for events like these because they make us feel normal and God it feels good to get out and feel normal.

We got home at 2.30pm and Beanpole and I have been cwtched up on the sofa under a blanket since watching Willow whilst I sink into a nice dihyrocodeine fuzz. All spoons have gone, but it’s been a good day & I’m so proud of my babies for helping out their school and taking care of me. We’re a pretty awesome team.

I’ll have to wait and update this post when I find out how much they raised. But as a nice little bonus, I got to give lots off posters and things from when I signed up with EDS UK to the school to help raise awareness with the teachers 🙂

This is me and TinyPants with the Headteacher, Mrs Harrison. I’m going to miss these days when they’re all grown up in high school.

I’d like to introduce you to TinyPants. Because once upon a time she was tiny.

Way back when I had no idea what EDS was and all I knew was that my back hurt and my pelvis wobbled way out of shape, a tiny person decided that they’d had enough time cooking and made a rather dramatic entrance. At 35 weeks cooked, it took 52 hours of screaming labour, a head stuck in my pelvis, attempting to knock myself out with ineffectual gas & air, an epidural that didn’t work and an ER style c-section, and a Beanpole was born.

16 months later, in a less dramatic fashion, but equally unexpected a TinyPants arrived. She was grey and slimy and 32 weeks cooked to the day. She gave an almighty yell then promptly stopped breathing. If I’m honest, it probably would’ve been quite useful to know that EDS comes with early membrane rupture. Oh, and a resistance to all things local anesthetic (that would’ve reallyhelped).

Luckily for us, the medical staff whisked her off and put her in a box. We don’t have many early photos of her. I guess we were just too caught up in having two babies and didn’t want to jinx anything if we took photos? I don’t know. It was all a bit of a blur of tiny nappies, chapped nipple and milk donations.

After coming home, the apnea continued and my tiny wriggling frog wore a remote control to warn us that she’d stopped breathing for a further 6 months. We were warned when my waters broke suddenly one day that she wouldn’t be able to breastfeed, that she may have health issues, that her sight may be affected & that she would be developmentally delayed.

They clearly hadn’t bargained on my daughter.

By 9 months she was trying to walk. And was still had a breast obsession to rival her father’s.

Her vocabulary was perfect for her birth age, but what was most remarkable was (is) her ability to wrap everyone around her little finger with head tilt and a smile or a squeezy hug.

As she got older, it was clear that she was leaving academia to her sister, even though she was perfectly capable. Her love of all things arty started early with painting her sibling, colouring everything (including my walls) and drawing elaborate art on her own body by sneaking felt tips under her bed. She also taught me that gender is fluid – there’s nothing wrong with wearing a tutu whilst also weilding a sword and demanding curly hair. Then later asking for it all chopped off to look like Willy Wonka (actually, it really worked).

As she got older, she proved everyone wrong by being strong, insanely healthy, and head strong (with 20-20 vision).

So, a decade ago a tiny little frog emerged from my belly and has not stopped wriggling, shouting, and generally letting the world know that she’s going to kick it’s arse since.